Sturge-Weber Syndrome (SWS)
Sturge-Weber Syndrome (SWS) is the association of a facial port-wine stain with abnormal vessels on the surface of the brain (leptomeningeal angioma) , glaucoma , or both. Some people have an isolated intracranial variant, meaning abnormal brain blood vessels with no skin or eye symptoms. SWS does NOT generally run in families. It can affect one side (in about 85%) or both sides of the body (in about 15%).
The presence of a port-wine stain involving the forehead or eyelids raises the suspicion of SWS. These infants and children must be followed closely for other medical issues, including vision problems, epilepsy, and developmental delays.
We do not know what causes SWS however treatments are available for many of the complications of the disease. More research is needed to understand the cause of SWS, how to treat it, and how to prevent the medical and developmental problems resulting from it.
The presence of a port-wine stain involving the forehead or eyelids raises the suspicion of SWS. These infants and children must be followed closely for other medical issues, including vision problems, epilepsy, and developmental delays.
We do not know what causes SWS however treatments are available for many of the complications of the disease. More research is needed to understand the cause of SWS, how to treat it, and how to prevent the medical and developmental problems resulting from it.
·Bands On The Bay
·Kennedy Krieger Research Update: The Hunter Nelson Sturge-Weber Center
·NIH Expansion of Rare Diseases Clinical Research Network to Include Kennedy Krieger Institute
·Rockin’ for a Cause
·Rockin' On the Bay on April 26th
·Sturge-Weber Syndrome Center Offers Nation’s Leading Treatment Approach For Children With Complex Disease
·Kennedy Krieger Research Update: The Hunter Nelson Sturge-Weber Center
·NIH Expansion of Rare Diseases Clinical Research Network to Include Kennedy Krieger Institute
·Rockin’ for a Cause
·Rockin' On the Bay on April 26th
·Sturge-Weber Syndrome Center Offers Nation’s Leading Treatment Approach For Children With Complex Disease
The Resource Finder: A Project of Kennedy Krieger Institute
The Sturge-Weber Foundation
(http://www.sturge-weber.com)
Johns Hopkins Medicine: Department of Dermatology
(http://www.hopkinsdermatology.org)
Vascular Birthmarks Foundation
(http://www.birthmark.org)
National Organization for Rare Diseases
(http://www.rarediseases.org)
The Sturge-Weber Foundation
(http://www.sturge-weber.com)
Johns Hopkins Medicine: Department of Dermatology
(http://www.hopkinsdermatology.org)
Vascular Birthmarks Foundation
(http://www.birthmark.org)
National Organization for Rare Diseases
(http://www.rarediseases.org)


